Monday, December 29, 2014

I don't even remember what the particular news items were, but the other day I said to Quinn, "Go ask Daddy if he wants to hear the good news or the bad news first." So now when Quinn has something to tell me, he'll say, "Do you want to hear the good news?" Followed by something like, "I built a treasure box for my rocket ship!"

With him, there's no bad news.

This is a post about some bad news, though. I've hesitated to write about this because it's not cancer-related and I know I'm inviting so many opinions by opening up about it. But, me being me, I wrote about our dog adoption in this space already, so I figured I owe you guys an update.

Also? The last few weeks have been pure Christmas chaos abundance, with a train ride to the North Pole (where we blamed there being no snow on global warming, and I'm not sure Quinn bought it because it was 29 degrees out and that might be the coldest he's ever been), a cookie exchange party we're still eating the remnants from, a couple of holiday open houses, a family limo ride courtesy of Chris's aunt to view Christmas lights, waffles with Santa at Quinn's preschool, and Quinn asking Santa for exactly two things: a menorah to light candles for eight days at our house and a remote control spider to scare his mommy. Guess which one Santa delivered?

I hope you all have had equally abundant holiday seasons. I am so lucky to get to experience this time of year, this life I've got with Chris and Quinn, and this was the first Christmas since 2011 that I didn't wonder if it would be my last. Instead, I probably tried a little too hard to put in place holiday traditions that would make the season as magical as possible for my little man, abandoning ship here because there just was no time for blogging after I figured out what to do with the elf every night.

I might skip the damn elf next year.

Back to the pup. A couple of weeks after we brought Luna home there was an incident that made it clear she shouldn't be in a house with a preschooler (or a cat, for that matter). She was extraordinarily sweet in so many regards and attached herself to me pretty quickly, but I couldn't be as vigilant as I would have needed to be to ensure everyone's safety. It broke my heart even after only two weeks, but the rescue organization took her back earlier this month.

Quinn says our house is boring without Luna, which is true. The good news (if I can spin it) is that our cat has come out of hiding after spending more than two weeks hidden in a closet in the back of the house. And the rest of us are once again in the market for a (child- and cat-friendly) dog.

Friday, December 19, 2014

I came down with a cold this week -- or maybe last, but it really hit this week as I was recovering from chemo. Perfect timing! Then Quinn spent Tuesday night feverishly whimpering in bed next to me. He woke up sick to his stomach Wednesday morning, which made two of us. The last few days have been kind of a blur. In traditional denial-ist fashion, I've been telling myself I just have terrible allergies, even as my head has spent most of this week feeling like I got run over by a reindeer.

I managed to make it to yoga earlier in the week (or late last week?), hoping to sweat out some of the gunk that's been plaguing me. I ran into a friend and mentioned that I've been feeling like I'm on a hamster wheel lately, with the decorating and shopping and cards and laundry and cleaning and baking and school activities and I just hadn't been feeling very festive. "Oh my God, me too," she said.

She told me she'd been feeling the same thing but had had a session with a local woman who is part therapist, part energy healer. And I might normally roll my eyes, but this friend is especially grounded and I've had some pretty remarkable sessions with people doing energy work myself. Also, my friend told me something that really struck home. Her therapist/healer suggested looking at the items on the hamster wheel from a slightly different perspective, shifting her gaze just a tad so things no longer feel like chores. Hearing this, it was as if I was suddenly given permission to be okay with the chaos, to embrace it even, to possibly find some kooky sort of joy in it. I feel like my friend got a two-for-one deal because this was EXACTLY the nudge I needed to get my head out of my ass.

Then, another woman I didn't know too well -- but who was also rejected by The TODAY Show before she was invited (and attended) on the Plaza with Joan Lunden -- passed away this week. We'd sent each other congratulatory notes on our TODAY appearances. A few weeks later, she suffered a stroke from which she never really recovered. Despite all that, in October, she tweeted this, which is a perfect little nugget of wisdom. Thank you, Annie.

I beg of the world. Stop complaining. Find ways to be happy. Seriously. Dig deep. Even in my worst times, I still try. No matter how hard.
— Annie Goodman (@annieg917) October 28, 2014

Tuesday, December 16, 2014

Yesterday was a chemo day, plus I found out I have something in my left hip called iliopsoas tendonitis as well as shallow hip sockets, for whatever that's worth. Basically, between the two, I'm on track to feel like an 80-year-old woman this week. On the plus side, both chemo and my faulty hip will force me to take it easy for a few days, so there's a chance I could get my holiday cards out the door this week. See? There's always a silver lining.

At chemo with my friend Sandi last summer (because I didn't have a more recent chemo pic).

Here's some of what caught my attention on the internet this week. There was a lot of information released because of the annual Breast Cancer Symposium in San Antonio, so I apologize for the length of this edition. I hope you find it useful.

"'We found that mutation carriers who received anthracycline treatment do not have an increased risk of cardiac dysfunction, and that reduced cardiac function was very low in all patients, suggesting low risk of cardiac problems late after chemotherapy treatment,' Barac says. 'Our results are applicable only to patients without significant cardiovascular risk factors, particularly hypertension.'"

"A University of Colorado Cancer Center study being presented at the San Antonio Breast Cancer Symposium shows that triple negative breast cancer cells process tryptophan [yes, the stuff in turkey] to promote survival while traveling through the body in order to seed new tumor sites."

"'The median survival for patients with triple-negative breast cancer is approximately one year,' Nanda said. 'We need better treatments for this disease. The promising activity of pembrolizumab seen in PD-L1-expressing, triple-negative breast cancer is exciting, and certainly worthy of further investigation.'"

"Taking the cancer drug tamoxifen for five years drives down the incidence of breast cancer in women at high risk for the disease by close to 30%, researchers have found. And the medication's protective effects against breast cancer appear to last, unabated, for as long as 16 years after a woman stops taking it, a new study says."

"With such long follow-up, there has not yet been a meaningful difference observed, either way, in breast cancer-related or overall mortality. Worrisome, too, is a slightly increased number of estrogen-receptor negative tumors observed in the tamoxifen arm of the study."

"Adding everolimus (Afinitor, Novartis) to trastuzumab (Herceptin, Genentech) and paclitaxel did not significantly improve progression-free survival as a first-line treatment for women with human epidermal growth factor receptor-2 positive (HER2+) advanced breast cancer, according to the results of the BOLERO-1 trial. Novartis announced the results at the 2014 San Antonio Breast Cancer Symposium."

Wednesday, December 10, 2014

As I mentioned back in June, I've been working on growing out my hair. And I haven't been updating you as promised because it would literally be like watching grass grow. Except, you know -- hair.

At this rate I'm going to be forty-two by the time I have enough to donate. But it's been six months so I thought it would be a good time to finally show you the progress I am making. (Here's where I started, if you're interested.) Also, I went a little darker for the fall, if you're keeping tabs on that sort of thing.

Another thing about this process: I schedule my hair appointments to coincide with my scan results. Am I the only one? Just in case I have to go back on broad spectrum chemo-chemo and lose my hair again, I don't want to do anything to it and be told I'll lose it a few weeks later. So I had my scan on November 10th and my hair color appointment two days later. My next scan will be in late February or early March, so expect another update then -- at which point maybe it'll finally be past these darn ears of mine.

Monday, December 8, 2014

Call me naive, but I didn't know it would be quite this hard to introduce our cat to our dog. The cat has spent the better part of the last week holed up in a closet in one of our bedrooms. But Luna-Dune, as we've all started calling her, is fitting in with our family nicely. Most importantly, she appears to have sated my urge to have/adopt/somehow acquire another child. This is exhausting enough, thank-you-very-much.

(But look how cute she is...)

When I wasn't busy Instagramming photos of my dog, here's what caught my attention on the internet this week.

This makes me both hopeful and terribly sad that metastatic patients won't be included in the next phase of research.

"If we give the vaccine to patients at the beginning of treatment, the immune systems should not be compromised like in patients with metastatic disease," Gillanders said. "We also will be able to do more informative immune monitoring than we did in this preliminary trial. Now that we have good evidence that the vaccine is safe, we think testing it in newly diagnosed patients will give us a better idea of the effectiveness of the therapy."

That her words "stirred debate" is a bit of an understatement, at least in the breast cancer community.

"Singer Melissa Etheridge's comments that breast-cancer genes can be turned on or off by diet are being challenged by doctors and others, who say they are hurtful and could mislead millions of people."

"Most patients with triple-negative breast cancer should undergo genetic testing for mutations in known breast cancer predisposition genes, including BRCA1 and BRCA2, a Mayo Clinic-led study has found. The findings come from the largest analysis to date of genetic mutations in this aggressive form of breast cancer. The results of the research appear in the Journal of Clinical Oncology."

"Scientists at A*STAR's Genome Institute of Singapore (GIS), in collaboration with local clinicians and colleagues in the USA, have identified a biomarker which is strongly associated with triple negative breast cancer (TNBC), a highly aggressive carcinoma that often has early relapse and metastasis following chemotherapy. The newly identified biomarker, a gene called RASAL2, provides a target for developing new therapeutics designed to treat this often deadly disease."

"And who are the brave ones in the country's breast cancer conversation? They're so quiet as to be all but ignored. They're the women with metastatic disease, especially the young women I get chemo alongside at Dana-Farber Cancer Institute in Boston, the ones who really may not see their children graduate from kindergarten, let alone high school."

"Women with breast cancer who engage in physical activity, even if at moderate level, have a lower risk of death, cancer-specific or not; according to new research presented yesterday at the 2014 World Cancer Congress in Melbourne, Australia."

Friday, December 5, 2014

This last week has tested every bit of my patience with Quinn, and my patience has failed that test on more than one occasion. I have yelled (granted, there was either a hot glue gun or a dog lunging after our cat involved). I have taken toys away, placing them in a pile on our kitchen counter so Quinn could see exactly how many times he didn't listen to me that day. I have threatened to call Santa.

The thing is, I think I know what's going on. First my mom came to visit. Then my dad and his new wife were here visiting for a week over Thanksgiving, a week in which Quinn hardly went to preschool and was doted on and played with fairly nonstop ten to twelve hours a day. Then they left.

I do my best to play and play and play, but I also have meals to cook, laundry to fold, and a new dog to try to befriend to our cranky, panicky cat. I am no match for Grandma Sue or Grandpa and YaYa. Quinn has reacted pretty much the way he does when Chris leaves for Africa: petulant and ornery and just sort of perfectly three, a phase that typically lasts about a week post-departure.

Lately, if Chris or I ask Quinn to stop doing anything, his inevitable response starts with: "But I was just..." to the point where I told him that the word "just" wasn't allowed in our house any more. I will put a toy on the counter, so help me god.

There's a chance this all has nothing to do with our company leaving, and could just be Quinn picking up on our collective insanity this week -- the seemingly natural craze that comes with this time of year, with ordering holiday cards and shopping for gifts and Chris finishing up his semester at ASU and decorating and holiday parties and all of the STUFF. Not to mention the damn elf on the damn shelf. Also, we added a family member this week. It's a little nutso around here.

I've been waiting for my sweet boy (the one who isn't quite so cantankerous) to make a full-time appearance again. Then last night, he did, and it left me sobbing in bed next to him. We were lying down, talking about our day, our week, and how we'd both like to be better, to do better. I told him about all the things he does to make me proud: introducing himself ("I'm Quinn James Campisano, Quinn James Campisano, Quinn James Campisano...") to a new friend at swimming, being exceptionally sweet with our pets, and cleaning up his toys when it's time for dinner.

He asked to cuddle, then changed the subject somewhat abruptly.

"Mom, when I get older, I don't want to die."

"Honey, you don't have to worry about that for a long, long time." I stroked his hair off his forehead. After several identical interactions over the last week, though, I've started wondering if this is something we need to talk about more deeply. Where is this fear coming from?

Is this normal 3-year-old stuff? I tried to explain that that's the beauty of this life, that we should enjoy it while we're here because eventually (a long, long time from now, we hope), we all have to stop living.

"Some people believe that when you die, you're reunited with your loved ones who've died before you." I tried.

"But I love you and daddy and Loki and Luna! The people in THIS house. I WANT TO STAY HERE." He was getting worked up.

"Honey, we're here right now, and that's what matters, right?" I hugged him a little tighter.

He continued. "When you die, what if we go different places? I don't want you to go anywhere. I don't want you to go away from me." And then I lost it. Usually I can hold back my tears in front of him, but not after that. The tears could not stop themselves. "Mommy, don't cry," he told me.

I took a deep breath and pulled myself together. "Let's just stay here together as a family for as long as we can, okay buddy?" This seemed to satisfy him and alleviate his worries -- for last night, anyway.

I did not know parenting was going to be this challenging. These conversations are not getting any easier. Have you talked to your children about death? Am I over-thinking this because of my own situation? Has cancer ruined my perspective? Is all of this perfectly normal?

Between chemo last Monday, Thanksgiving on Thursday, and family in town, I hardly turned on my computer. My dad and his wife came to visit for the week. We only debated a little bit about the recent elections, we ate turkey and pumpkin pie until our bellies ached, and we watched football (where Chris and Quinn cheered for the "Go Niners" and the rest of us celebrated the Seahawks).

And we adopted a dog.

It was exactly the week I needed. How about you? How did you spend your holiday?

Now to panic since it's December and I haven't started Christmas shopping yet. In the meantime, here's what caught my attention on the web over the past couple of weeks.

"The team determined that the tumors had developed six different mutations that led to drug resistance. But the result of all these mutations was the same: The tumors had lost the ability to express a protein called PTEN.

The findings suggest a new approach for combating drug resistance by taking advantage of the fact that not all PI3K inhibitors work using the same mechanism."

"Blocking cancer cells' ability to generate the energy they need to grow and divide is an exciting new avenue for future cancer treatments. This research suggests that MCT inhibitors may be particularly effective against breast cancer 'stem cells' that can resist other treatments, and could prevent the cancer from coming back - but further work is needed to find out if these drugs can help patients. Cancer Research UK is funding trials of these drugs in a range of cancer types."

"Once they identified the cancer cells, the researchers were able to separate them from normal cells. This ability to isolate, culture and grow the cancer cells will allow researchers to zero in on the cancer cells that matter to the health of the patient. Most circulating tumor cells may not metastasize, and analysis of the cancer cells could identify those that will."

"For Mimi Cavalheiro, who is genetically at risk for both breast and ovarian cancers, the question of a diagnosis is not an “if” but “when.”

Cavalheiro is one of about 100 Bay Area women between 35 and 50 years old with the BRCA1 or BRCA2 mutations who are participating in a clinical trial that is examining changes in cardiovascular health, bone density, sexual function, quality of life and other effects on women who go into early menopause."

"Women who are genetically susceptible to breast cancer and develop it in one breast are at higher than average risk for a tumor in the other breast, and that risk may increase as time goes on, according to a new analysis."

"'For the first time, it might be feasible to develop a reliable diagnostic test to help guide treatment decisions by predicting who will respond,' says physician-scientist Timothy Chan, who led the research. The findings could also inspire new research that potentially may lead to more-powerful immunotherapies for melanoma as well as for other cancers."

Welcome

Writing about my journey at the intersection of metastatic breast cancer and motherhood. Diagnosed with Stage 4 cancer at age 32 and when my son was just five months old, this is the story of how I've learned to take life one day at a time -- through treatment, potty training, and, eventually, recovery.